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Friday, May 20, 2016

9 Tips For Special Needs Parents

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.

I still have a lot to learn about having a child with special/medical
needs, but I have learned a few things since Davy was born. They're things I wish I'd known right from the start so I thought I'd
share them with you.

1. Keep the diaper bag overstocked & ready to go.

There have been
quite a few last minute doctors' appointments that I thought would be
quick, but turned out to be all-day affairs. Having the diaper bag
always packed meant that I was ready to go at a moment's notice and
keeping it overstocked meant that I didn't run out of diapers when we
were gone longer than anticipated. My favorite diaper bag (and I tried out quite a few over the course of 4 kids!) was this Jeep backpack diaper bag. It kept my hands free and easily clipped onto a stroller, plus it was roomy enough for everything (including tube feeding supplies) we needed with lots of pockets for organization.

If your child is too old for a diaper bag, having a "go bag" packed and left in the car with a change of clothes for both you and your child is also a great idea.

2. Bring snacks for yourself.

I learned this the hard way when a quick
morning check-up with Davy's doctor turned into a transfer to the
ER where we spent over five hours before being sent to the hospital for
an overnight stay. I didn't have time to eat breakfast before I left
and assumed I'd be home for lunch. It was after 9 pm before I was
finally able to get something to eat. Now I keep a couple of protein bars in the diaper bag and my purse at all times.

Davy during his 2nd hospitalization

3. Bring something to do.

You will probably spend a lot of time sitting
at the doctors office and in the hospital. Most places have free wifi
so definitely take advantage of that if you have a mobile device.
Don't forget chargers for your phone, tablet, etc so they don't die on
you! The first time Davy was admitted to the hospital, my phone
went dead before I was able to finish making the phone calls I needed to
make to locate an overnight babysitter for the older kids.

4. Keep your child's outfits simple.

If you have babies or small
children, you know that they usually have to get undressed at the
doctors' anyways. When your child is seeing multiple doctors in one day or is
hospitalized, certain outfits will make exams easier. While Davy
was in the hospital, they allowed him to wear his own clothes so he'd
be more comfortable. I dressed him in sleepers that snapped down the
front so we could run wires and tubes in between the snaps and easily
undress him for exams. After he got his G Tube placed, I continued to
dress him in snap-front sleep and plays (my favorite were from Carter's) for a while because they allowed easy
access to his button.

5. Know your family and friends' work schedules.

I'm not saying you
need to memorize their hours, but it helps to at least have an idea of
when they are usually at work so you know who is most likely to be
available when you need a last-minute babysitter for your other kids or a
ride to the hospital.

Davy during his 2nd hospitalization

6. Take a notebook to appointments for notes and questions.

When Davy was hospitalized for nine days, I ran out to Walmart and bought a notebook to keep track of all
the tests they were running, questions I needed to ask during rounds,
his weight checks, etc. It was immensely helpful. I've since upgraded
him to a 3 ring binder with sections such as contact info for his
specialists, questions, a list of his symptoms and diagnoses, weight
checks, etc for organizing information.

7. Use your cell phone alarm for feedings or medication reminders.

My
phone stores up to 10 alarms so when Davy had to have tube feedings every three hours, I would set an alarm for each feeding first thing in the morning. When you get busy, time
can get away from you so it helps to have an alarm.

8. Accept help from others when they offer, don't be afraid to ask for
help, and realize that this is your new normal.

Yeah, it's hard to have
to ask people for help when you want to be able to do everything on
your own, but you're going to need help and emotional support. I found a lot of the support I needed in Facebook groups for parents of special needs children.

I'm sure you never thought this would be your reality, but here you
are. Allow yourself to fall apart and cry sometimes when you need
to. You can't be strong all the time, but you can pick yourself back up and keep moving forward.

19 comments:

Hannah, these are brilliant ideas. I especially think the notebook (binder), change of clothes, and snacks are important. And setting alarms. There is no way to know what will happen, but having these steps in place will alleviate some of the stress. That is also a good idea about having friends' and family's schedules at hand. I am sorry that you have to know these things so well, but thank you for sharing them with others!

The hours that I have personally spent in the hospital when our children were young are huge in number. We took turns and had a network of family and friends that helped out. Your notes are right on line and I so agree with them. These will help all those that are needing the help as they go through the period of staying in hospitals not knowing when their child will be in hospital or at home. Thanks for sharing this valuable information

It is really important to stay on top of feedings. I was once on a trip with special needs children and one of the counselors lost track of time. The child started to cry and they realized she was late for a feed. Since most children cannot speak up for themselves it is the responsibility of the adult. A little scary but with the phone alarms being so amazing, no feedings were ever missed again.

I agree! With 3 other kids to take care of, it didn't take me long to realize that it was very easy to lose track of time and miss a feeding. My son didn't have natural hunger cues so he wouldn't cry for food no matter how long between feedings.

All of these are essential, but for the notebook with pen and bringing food for myself are important. I always forget things and these are the two that I always miss. I've been regretful of it many times, but I'm getting better at remembering it.

These are great tips not only for a special needs mom but for all mom's. Mom's of special needs children are just that special. They are often stronger then us all and are incredible resources for every mom to learn from.

I love these tips - they are all spot on and very practical. I know I've been caught out without food and supplies before as I thought it was going to be just a quick appointment and either you wait for hours or complications arise that see you headed for emergency. Great suggestions for any new special needs parents x